Don’t Call Me, Maybe

I had a phone call today from my oldest’s school. They were calling to arrange a parent teacher meeting.. Unfortunately I couldn’t understand a word, and while one might think I slipped in progress regarding the phone, I haven’t, at least, not as yet.

It seems switching from a Samsung to the iPhone probably wasn’t a good move, as there didn’t seem much volume even with the speaker phone on. However, I had been feeling that my current programs need tweaking and as I haven’t been mapped since last March, it’s entirely probable that I’ve acclimated to them.

Suffice it to say, I had to get help, and was worried about why they had phoned. It wasn’t an emergency, but it has me thinking that, I really need to have people understand, that if it isn’t an emergency, to use email. Fortunately my friends and family use all manner of text media to reach me. My family Dr will email me after I call, and in many cases, if I ask, places will oblige.

It had me concerned about when my youngest starts school in the fall and what to do should he needs picking up. I registered him for Junior Kindergarten today on the board website. Along the way I discovered I could register for a new accommodation for parents, called the Family Room. This allows parents to get messages via texts, email, etc. I already follow the board and our school on social media, which is one way to keep apprised of things like school closures and bus cancellations. I thought this was an amazing feature offered by the school board and it alleviated some concerns I have. I will still ensure the school personally knows that I am Deaf, and to use email when possible, just to alleviate stress on myself.

I have nine months until he starts school, which I guess means I need to find a solution to the phone issue. I don’t have Bluetooth capability with my Neptune, and my hearing aid, which does, is now kaput.. Joy. And I have had calls and voice messages and I cannot hear or understand any of them. Needless to say I am frustrated.

However it does not mean I regret the switch to the IPhone 6, at all, in fact far from it. It allows me to use some of the apps I have been using for my AVT, and I hope that in using them on the phone, I’ll be able to use the phone in the end. When will I achieve my goal of at least 90% comprehension on the phone? Who knows, but I will get there. Eventually. Maybe. Someday. Whenever it happens. In the future. You get the drift…right?

In the meantime, Don’t Call Me, Maybe…… Instead, Email or text me 🙂

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Fitness Challenges for a Deaf Individual

One of the biggest challenges for me in getting fit and staying fit was keeping interested. That, and being able to follow a program or instructor. I’m not one to go jogging alone (scares the crap out of me safety-wise). Plus walks and jogging bore me. I love soccer, so I play and coach as much as I can. But what do I do in the winter or when it’s raining? Plus I like variety in activity but I’ve gotta LOVE it too. I need to be HOOKED to stick with something.

I’ve never been able to follow classes because even being up front, the music and the bouncing movement of the instructor makes lip reading and hearing the commands impossible.

I’ve tried the yoga and Pilates DVDs and classes. I love both, but then the issue becomes being able to see and understand the instructor while doing downward dog. Craning your neck and looking up is difficult plus it defeats the whole purpose of downward dog or warrior pose. So of course I bagged that route, which really isn’t good for my mental health as yoga is good for that.

Then I watched a friend go through two pregnancies while doing Les Mills Pump, and become a certified instructor in it. She is petite like me and at times also had weight issues. Now, after four babies she has a body I’d kill for. Her trick: Shakeology and Les Mills Pump program. She believes in it so strongly that her pictures, and enthusiasm for it got my attention.

I ordered Les Mills Pump and Combat and quickly became HOOKED on Pump. (Combat I just received and haven’t started yet). Then I joined Beachbody under her to be a coach. Of course, I wish to gain income from this, but I believe in the program (unfortunately Beachbody will not be carrying these products So while supplies last, they are on sale) so I decided to become a coach.

As a deaf person I really need to be able to understand and follow instructions and this program allows me to do that. I’m so happy and excited that I have something that I look forward to doing.

When you rely on lip reading or signing, it really makes it hard to find things that you enjoy and can stick with to have an active lifestyle and a healthy one without having to do things on your own.

So if you’re reading this and feeling as frustrated as I was in finding an exercise program, this is it. I promise!

My Facebook post today:
I am so excited to resume my Les Mills Pump today. Migraine is FINALLY gone. A week not doing this was chafing me and i have missed it. That’s pretty cool to me. I’m still starting a challenge group starting next week why not go to http://www.teambeachbody.com/DeafChica and check out the fitness programs and Shakeology and ultimate reset programs? Join me in revolutionizing our lives for the better. Resolutions are for pansies, REVOLUTION is where it’s at!

Connect to me through my contact link on the right and I will add you to my Facebook and challenge group.

Deaf for a Day Challenge

John Barrowman, a British Actor known for his role as the dashing Captain Jack on Dr. Who, went deaf for a day. Here is a link to his blog, and video clip. click here

I love that he did this to raise awareness for the hearing dogs in Britain. He succinctly and accurately describes the effects of a sudden hearing loss. His fatigue, the efforts to communicate, anxiety over his surroundings are all what we experience daily.

I wish more people would try this experiment for a day, or even better, a week. Particularly family and friends who don’t always understand the difficulties I experience daily. Even with the aid of my hearing aid, and cochlear implant processor (which does make things easier), it is still exhausting.

Going deaf for a day is a drop in the bucket of what deaf people live with and experience daily. Let’s create a full bucket of those experiences.

My challenge to my readers:

If you’re a hearing person reading this, I want to challenge you to go deaf for a day, and email me here your experience. I may even add it to my book that I am writing. Write anything and everything that comes to mind about your experience.

Go to a hearing Center, and explain what you plan to do, and have them create a sound blocking mold for you. Go about your life as you normal do and record all your thoughts and experiences for the day. If you’re brave enough, try going for a week. I’d love to see what experiences you have, and will share with my readers your experiences.

Those of you who are deaf, see if your friends and family will participate, so that they may gain an insight into your lives.

Good luck!

The Cochlea- My Canada Writes Creative Non-Fiction Submission for 2014

After a long six months wait, I learned that my submission didn’t make the longlist. It was my first submission, so I am hardly surprised, but a tad disappointed. Only a handful of people have seen this during the writing process, thanks to them, I put together a story I felt comfortable submitting.

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Diversity Within

Diversity to many of us usually calls up different cultures, skin colour, languages and so on. There is diversity within each community, even a small community of 500 is diverse. So too is there diversity within a Deaf community. Most people think the Deaf community is composed of people that are completely deaf, and only sign. While that was once true, it has changed greatly, and continues to change rapidly. Unfortunately, many within the Deaf community prefer that it remain only signing, and are vehement about their position towards those who don’t meet their criteria.

The Deaf community as I see it contains a large group of adults and children who:
have a variety of levels of hearing loss,
born with the loss or late deafened
may use hearing aids or have a cochlear implant,
may go without a hearing aid or cochlear implant,
may use ASL, SEE or don’t sign
may be oral as I am, or speak when needed

The choices of a deaf or HOH person shouldn’t subject them to audism and bigotry from others in the Deaf community. Yet it does, and the Deaf community is extremely negative towards those that don’t sign, that have cochlear implants, or choose to be oral only.

Over the past couple of weeks there has been much debate over these topics. The majority of the people debating these topics are people who are open minded, educated on the topics, and are respectful towards others. However there are a group of individuals who choose to be negative towards others; they claim they are not judging and yet they are.

These people criticize the use of the cochlear implant, and spread misinformation, myths, and don’t cite reliable sources for their reasoning. They complain about not being accepted by the hearing, by the HOH, by those like me who is oral, and chose to get the cochlear implant. Yet they don’t accept the great diversity that is in their community. Too much focus is put on our choices and the choices made by hearing parents rather than embracing the diversity that comes from those choices.

Those naysayers, and critical, judgemental people have lost sight of the fact that the world has changed. That we have greater access to technology than we once have, that we benefit from. That those of us who are oral and living in the hearing community are representatives of the Deaf community, and are our advocates for bringing change. Change in captioning in movie theatres, on apps like Netflix and Hulu Plus, and in entertainment. They are advocates for educating the hearing on the lives and challenges of the Deaf community. They’ve lost sight of the fact that together as a whole we can bring more changes to accessibility for the Deaf.

There is an oft quoted mantra that applies here:

DIVIDED WE FALL, UNITED WE STAND

By remaining divisive within the Deaf community we will always struggle to gain the accessibility we need. We will continue to struggle to gain the assistance needed in our education, work, and everyday lives. Our children and their parents will continue to be made to choose between signing or speaking by the professionals and the Deaf in the community who should be advocating for both.

Technology is changing, and I see much of it still being optimized for the hearing population and any accessibility for the deaf population will be an afterthought. Captioning has been around for years but it is still lagging in the entertainment and media industries, just looking at YouTube, Hulu Plus, and Cinema Now reveals the lack of thought for the deaf community.

It is law in Canada and the United States that accommodations must be provided in all social services, places of employment, and businesses and yet we are still lagging behind for the deaf, as well as the blind, physically challenged, and mentally challenged individuals in our society.

So why is the Deaf Community allowing themselves to remain divided, and not accept our own diversity?

DIVIDED WE FALL, UNITED WE STAND

Two Year Activation Anniversary

So the day after my daughter turns thirteen (gasp a teenager), it is my two year activation anniversary. Two years ago today I heard beeps, tones, tinny voices and had faint impressions of words being said. It was a fairly normal activation, and one that is most often everyone’s activation. I was fully prepared for it, and my expectations were low, so I wasn’t disappointed in not having a Rock Star activation. A Rock Star activation is defined as hearing normal sounds and speech, and comprehension of speech.

Activation is when the audiologist turns on the implant with the processor and program your processor to stimulate the cochlea. A good audiologist will program the right amount of volume, balance the electrodes, and sure you aren’t having facial twitching, or discomfort. Mapping sessions are what follows in the weeks, months, years after, to keep you hearing as effectively as possible.

I’ve come a long way since that day, and I am very pleased with the results and I know my decision to implant was the right one. I have been fortunate to become part of an Auditory Verbal Therapy study since last October, which has added more information to my knowledge banks and helped me with understanding my toddler more easily. It’s been worth the journey even with all the ups and downs over the past two years.

I’ve been reading numerous posts in my Facebook groups about people wondering what to expect, and having too high expectations going into their activations. Some come away disappointed and upset, having been unprepared by the audiologist in what to expect. Many of us who have experienced the process already have been busy reassuring, encouraging practice, and cheering the wows that start coming after those initial days.

I want to say to those awaiting activation the following:

— Keep your expectations realistic. You will hear beeps, tones, ringing (tinnitus), faint impressions of words and environmental sounds in the first week.
— As each day and week pass, you will realize what you are hearing, little by little, those little wows pile up.
— Big wows start coming with more mappings, and practice.
— Practice, practice, practice. (Link to apps and sites on the blog)
— Patience is the key word here.

The average is three months before things become recognizable and normal sounding. Everyone’s activation and progress is different but this is the average, and realistic for the majority of people implanted. The propensity of the media to inaccurate represent these activations, and the process it takes to become “hearing” leads to unrealistic expectations and dashed hopes. The media needs to do a better representation of the process it takes for the patient to achieve the full measure of success with their implant.

For infants and toddlers, it is different. While they hear beeps and tones as well, understanding what they are hearing isn’t as quick to come. The reason is because they are starting from ground zero. Their hearing age starts from the date of activation, rather than from birth as most babies are. It’s hard for parents and audiologists to know what is happening inside these little ones’ heads, so it is easy to assume it isn’t working. Many parents aren’t told this and have too high expectations for their children.

The truth is, they have a longer road, as they not only have to identify environmental sounds, and speech sounds, but also learn to turn those into speech, words, and communication. Quite a few parents have been told to choose between signing or speech, or no signing and speech only by audiologists and speech therapists. Some obey and do speech only and regret it, others choose sign, and others choose to do both.

These children need both sign and speech, and should have access to both forms of communication, and both communities. It boggles my mind to learn of parents being told:
— too young to learn sign (never),
— signing delays speech (hogwash, if it helps hearing children, it helps deaf children),
— too hard to learn two languages at once (hogwash, studies prove the best time to learn dual or multiple languages is before age seven)
— signing is too visually distracting so they won’t focus on the word spoken (again, hogwash. Signing gives a visual cue to the word spoken)

This has to stop. Parents need to be encouraged to give every means of communication available to their children, deaf and hearing included. Audiologists, speech therapists need to give true, realistic facts, and all the information parents, and patients need. It’s a difficult decision to implant, and the road after is long and difficult for many. Support needs to be given by everyone in the community, deaf, Deaf, HOH, as well as hearing. Communication and information sharing needs to occur, for everyone to succeed.

My parents and I asked questions over the years, and as I became an adult I advocated for myself, I shared and talked with others, all of which was crucial to my success, both before and after implantation. Without the knowledge I had, my last two years could have been much harder.

So after two years with my “new” hearing, I can honestly say it was the best decision I made for myself.

Message to the Media

As a child, I was the subject of many articles in my local paper, the Kingston Whig Standard. I was even part of the Through the Sound Barrier documentary, and local CKWS news segments. This was during the mid to late seventies in Kingston, Ontario. I have lost those articles to flooding, but hope to find them to share on my blog.

That said, I have a huge tremendous peeve to address. The media has a horrible, horrible tendency to inaccurately present facts, to sensationalize achievements when it comes to cochlear implant activations. Case in point: this video of a woman’s activation, which she gave me permission to use. Gift of Hearing.

She posted the link in our Facebook group, and I commented the following:

I hope the media made sure the public knew that this is an atypical activation. My biggest peeve is they make it out to be a cure and that everyone hears automatically, when the reality is, most of us have to work at it and wait for several months or longer to achieve the full access the CI gives.

Her response:

I know. I told him that over and over. Both audiologists told him that. I didn’t see that on the footage that he kept.

Adding: it does say it takes a year to rehab, however it is still a bit inaccurate, because everyone is different, and children in particular start from ground zero and often have a longer process than adults

Far too often the reporters sensationalize these events. It gives parents unrealistic expectations as they implant their young children. It gives other adults the impression that they too will have what is called a “ROCK STAR ACTIVATION”. This is an atypical activation, not the norm, and the ones that have activations like those are extremely lucky.

Mine was not the same, in fact, mine was the norm. All I heard were tinny voices, that were faint impressions of words in my brain, and random sounds. It took three months, which is average, before voices sounded normal and I could differentiate between male or female, or even pick it up thirty feet away. Longer still for my brain to acclimate to all the sounds. In fact it’s still working on building the auditory memory bank. With AVT, my ability to comprehend speech is improving, and with more work, I may not need to rely on lip reading, logic, guesswork to have conversations on the phone, or across a room, or from one room to the next.

My message is this: be accurate, be realistic, and yes celebrate a great achievement like this woman’s activation, but please for heaven’s sake, don’t sensationalize something that is not the norm for the majority of adults who get the cochlear implant, and certainly is not for children implanted. Don’t give unrealistic expectations to these families. It would be more accurate to follow the progress of several people, to show the difference in experience and achievements.

Rant over!